Roche Moves from Patient-Centricity to Patient-Inclusivity: Inside and Outside the Company
Roche’s Rebecca Vermeulen, VP of Global Patient Networks, Product Development Medical Affairs, is working to partner with patients in order to better connect medicine development to patient-inclusivity.
How are you bringing patient inclusivity to all aspects of Roche’s work?
I lead our Global Patient Networks, which is the team that works with patient organizations, patient advocates, and patient thought leaders/experts at a global level on behalf of Roche. We work across the organization to bring patients into strategic decision-making and into the design of our research programs. Our goal is to partner with the patient community early and systematically to create the most significant impact by validating our investment and partnering decisions, shaping key development decisions related to our products, designing patient-centric trials, supporting and, where acceptable, driving patient education, and developing initiatives that enable patients to gain access to treatment and care that deliver more relevant and impactful health outcomes.
Why is patient-driven science so important for the future of medicine development?
If you're making decisions solely based on the science, and not incorporating the patient perspective, then we may be missing the most important ways in which we can bring meaningful contributions to addressing existing unmet needs along the patient journey that is limiting optimal care.
For an example in oncology, from a purely clinical science perspective, overall survival is the validated endpoint. But that doesn’t capture the quality of life impacts that are increasingly important for patients. Patients today want to know how their day-to-day lives will be impacted by a new treatment. Why not factor that into our development decisions and how we prioritize the molecules we move forward? Only by thinking about the value of our medicines from the lens of the patient and the health systems that have to pay for them can we ultimately lower healthcare costs, drive equity in access, and improve quality of life.
If you're making decisions solely based on the science, and not incorporating the patient perspective, then we may be missing the most important ways in which we can bring meaningful contributions to addressing existing unmet needs
What do you see as the evolution of patient engagement in pharma?
At Roche, we’re moving away from terms like “patient engagement” and “patient centricity” because they don’t adequately capture the continuous partnership we aim to establish with the patient community. Our focus is on being a “patient-inclusive” company – and not just in the sense of diversity, equity, and inclusion. It is about ensuring that patients and their families – the people who depend on our science – are part of the dialogue, are part of the decision-making process, and have an active voice with our teams to guide their thinking.
I would like to see this further embedded across our company and across the industry. For us, it’s about “doing now what patients need next,” and the only people who can tell us what patients need next are the people and the families that are impacted by the diseases we are researching.
Roche has a unique patient group. Can you tell us about it?
In addition to our work with external advocates and organizations, Roche also has an internal network of employees, called the CareRing Community, who are patients and/or caregivers. The purpose of the program is to offer our employees a community they can tap into for support or simply to make connections with other individuals who may have a shared experience. Many CareRing members also use this community as their opportunity to connect more closely to our business by pressure-testing our assumptions and challenging our business decisions as it relates to the development, launch, and commercialization of our innovations. This doesn't replace our engagement with external stakeholders, but it is an added perspective that we can tap into with the support and consent of our employees.
I’d like to see the industry shift to balance science with an understanding of what patients truly need and desire in their care, to the outcomes they want.
What is one thing about how patient engagement gets done in pharma currently that you’d like to see changed?
I’d like to see a mindset shift in how we think about science. The pharmaceutical industry is inherently science-based, where the belief is that good science results in good products. The problem with this belief is that science is only as valuable if it benefits patients in the way they want to be benefitted. I’d like to see the industry shift to balance science with an understanding of what patients truly need and desire in their care, to the outcomes they want.
How has patient-driven science changed or impacted an endpoint at Roche?
The best example of this at Roche is the work we’ve done with the patient community on our Spinal Muscular Atrophy program. When we designed our studies, we looked at various scales that are available to the SMA research community to quantify the impact of the disease on the children who are diagnosed with it. These scales allowed us to look at motor functions.
We heard from the patient community about the importance of independence – of being able to perform typical daily activities like being able to get dressed and self-feeding. The scales available to us during our clinical research did not measure this specific outcome. Therefore, we partnered with the patient community to develop the Spinal Muscular Atrophy Independence Scale (SMAIS). The SMAIS is now a standard for how to assess meaningful patient outcomes for the children and families that are impacted by Spinal Muscular Atrophy.
How do you communicate the importance of something from a patient perspective back to your higher-ups or colleagues?
We are always looking to find moments where our broader organization can get direct exposure to the patient community as part of an open dialogue. We’ve engaged Senior Franchise Heads in Patient Advisory Board meetings at medical congresses. We’ve included one of our Global Heads of Development in a Community Advisory Board hosted by our patient organization partner. We’ve even coordinated a workshop where a group of oncology advocates has sat down with our Chief Medical Officer to talk about strategies to expand clinical trial access around the world.
In my experience, I have seen real change with this approach. When teams actually interact with the patient community rather than hearing about their perspective from another internal team member, they’re more motivated to implement the feedback.
When teams actually interact with the patient community rather than hearing about their perspective from another internal team member, they’re more motivated to implement the feedback.
Can you share an example of that direct contact in action?
A few months ago, one of our Patient Partnership Directors was advocating for the inclusion of a Study Participant Feedback Questionnaire in one of our oncology clinical trials after hearing about the need from the patient community. The inclusion of the questionnaire would have added time and resource constraints to the program, so the clinical development team decided to forego the suggestion.
A month later, the same clinical development team had the opportunity to meet with a patient advocate who shared their negative experience on a clinical trial and noted that it would have been helpful to have the means to share this feedback and communicate directly with the trial sponsor. Having heard this directly from the patient advocate, and finally understanding the importance of the connection to the sponsor, the team took steps to implement the questionnaire in the clinical trial.
You’re passionate about the convergence of ESG and patient engagement. Why is this so important?
As an industry, pharma companies have very specific measures we track about our impact on the environment and the local communities within which we operate. But we don’t always think about it through the societal lens of patients. I hope to stimulate some thought around the contribution patient engagement brings to society, including the tradeoff and governance decisions we make by incorporating patient feedback.
Some questions to consider are: Do we think about where we're placing clinical trials – in which countries, in which communities, in which setting – to ensure that we're doing this in an inclusive way? In a desire to develop medicines with patient preference in mind, are we making environmental trade-offs? If so, how do we balance the two? Are we thinking about being able to support access to treatments globally, and not just in countries that have well-developed health infrastructures? Are the organizations we work with patient-inclusive as well?
